This is the email I sent to my work; more details to come.
I know Steven has done a pretty good job updating everyone, but today (Sept 8, 2014) is the first day I can think clearly so I wanted to update you all on my diagnosis and how I’m doing.
On August 24th, one day before my 27th birthday, I woke up with a headache & neck pain which I thought was just from sleeping on my neck wrong so I took ibuprofen and toughed it out. Six days later I still had it but the pain was even worse, along with random numbness in my face, arm, leg & foot, and bad nausea/spinning, so Steven took me to urgent care. They said I had a migraine which was likely caused from sleeping on my neck wrong & to take Excedrine migraine and alternate ice/heat on my neck.
All of the symptoms continued through the next week but I couldn’t really tell they were getting worse since I was taking a pain reliever that lessened the pain. I even surfed at lunch on a few days, but got out of the water quickly because I just didn’t feel right. The spinning and feeling like I was going to vomit/faint got to the point where I mentioned what my symptoms were to coworkers “in case anything happened,” but I assumed I was just being paranoid.
On day 10 of these symptoms, I had an appointment with my primary doctor (the first day I called in sick to work), but when I called to see if my appointment could be pushed earlier, my doctor got on the phone, listened to my symptoms & said to go to the ER.
She said not to take any Excedrine or ibuprofen so they could test accurately, so by the time I got there, my pain was at a 15 – on a scale of 1-10. I had an emergency CAT scan and MRI with contrast that came back to show a tear in 1 of the 4 main arteries in my neck – called Vertebral Artery Dissection. What happens is a tear on the inside of the artery blocks blood flow to the brain – which is why I was having stroke symptoms of sudden headache, numbness, dizziness. VAD is said to have 2 main causes – spontaneous or blunt force trauma to the neck which I did not have, so this whole thing is being considered spontaneous.
I have been home for 2 days now (after being in the hospital for 2 days) & continue to have the symptoms, but am on multiple medications to control the pain, nausea, and blood thinners to prevent stroke. I mostly struggle with walking (because of the dizziness), focusing my vision quickly (I can focus fine on one thing, but then if I look somewhere else everything starts spinning), and I cannot move my neck at all. On the emotional side, I’m definitely going a little crazy not being able to do my usual activities (most of you know how active of a person I am and now just going outside for a walk is a big deal). I’m also dealing with a lot of fear about my recovery and frustration about why this happened to me (it happens to about 1 out of every 100,000 people).
I will be seeing a neurologist this week and will have another MRI to see how the blood is flowing & if the tear is healing. From what I was told in the ER, this has to heal on its own and can take anywhere from a few weeks to 18 months, with 60% of patients having complete recovery within 6 months. We will of course keep you all updated & depending on what my neurologist’s prognosis is, I hope to be back to work next week.
I am very very fortunate that I did not have an actual stroke. VAD is the leading cause of stoke in young people and very often leads to death in large part because patients are misdiagnosed with having a migraine – just like I was. Thankfully, I had what’s called a “Mini Stroke” or “TIA,” which is a stroke without permanent brain damage. I’m also very fortunate to have such a strong support system – my family and friends, including all of you, have been incredible and have made all the difference in helping me stay positive and hopeful.
Thank you for all your prayers, love, & support through this scary time.
Now that I’m home, I have a sensation where my lower jaw and throat feels tight/numb which create a slight feeling of choking/drowning when I eat or drink anything. It also seems to make it hard to me to say some things. Very frustrated & hoping this will go away soon… along w/ the pain, nausea, and mostly the fear. 🙁
Just one day after posting the updates #1 (above), I was readmitted to the hospital, where they found that a clot had developed on the right VAD & another VAD had developed on the left side. I ended up staying at Palomar Hospital (Escondido, CA) for 12 more days in the stroke unit. I was very uncertain about going back to the hospital, but went anyway since I had a strong gut feeling that something (else) was wrong. I basically spent all of September in the hospital… the scariest, most life threatening experience of my life. It’s been a roller coaster both on the physical & emotional side of things, but I’m happy to say I’ve overcome the worst of it. My goal now is to finish up my treatment, then share my story with the intent of educating & hopefully saving lives. More details coming soon…